While Bay Area Water District executives reap a rich harvest from the public trough, some of the lowest-income Californians, those with developmental disabilities, face the risk of losing services that can make a life-or-death difference. That's because state funding for these services has been essentially flat since 2009, following 2008's deep cuts. Developmental disabilities include Autism Spectrum Disorders (ASD), cerebral palsy, epilepsy and intellectual disabilities such as Down syndrome.
The groundbreaking 1974 Lanterman Act established the legal right of developmentally disabled people to services meeting their needs in the least restrictive setting, and created a system of Regional Centers to coordinated client-centered service delivery. Regional Centers “vendorize” (outsource) service delivery, and support local social service businesses providing a wide range of services; including case management and assistance navigating the maze of public services, behavioral therapy and coaching, help for day-to-day tasks, day care programs and job training and coaching.
In 2009, the annual cost of community-based care averaged $43,395 compared with $196,735 for care in state institutions nationally, according to independent federal agency National Council on Disability.
Today, 99 percent of California's developmentally disabled residents (288,000) now receive services in their communities; living with parents, relatives, in their own houses or apartments, or in group homes designed around their needs. Before that, families of people with developmental disabilities had two choices: institutionalization, or home care with no outside help.
As California's budget slid into an ocean of red ink, budgets for community-based services fell victim to across-the-board budget cuts, or remained flat, even as needs and costs were growing. Some cuts were back-filled with federal and other state funds. But where they weren't, programs and staff were cut and payments to service providers were frozen at unrealistic levels.
Now the system that led the country in helping people with developmental disabilities live productive lives, is headed for a breakdown, according to a 2015 study by the Association of Regional Center Agencies On the Brink of Collapse: The Consequences of Underfunding California’s Developmental Services System.
For example, rates for integrated employment services were cut 10 percent in 2008 and have stayed there. Rates for vocational and day care services remain based on 1996 costs. As a result, when agencies haven't been forced out of business, they've had to cut wages; making hiring and retaining skilled staff harder.
Despite high tech's economic boom in the last couple of years, and windfalls to county agency coffers supplied by municipal assets they appropriated in the Redevelopment Agency shut down, money for developmental disabilities services has barely changed.
California now places last in the nation with its $22,173 per-client spending on community-based services eligible for federal “waiver” funding — flexible spending agreements called “Medicaid Waivers.” The U.S. average is $45,795, with Delaware in first place, spending almost $100,000. California also has one of the country's highest caseload ratios: 1:66 compared to the average of 1:40.
A 2013 National Core Indicator survey measuring outcomes and recipient satisfaction with developmental services reported that of California respondents, 44 percent said support workers always have the right training. Thirty-one percent said they always have a choice of service agencies, and 63 percent reported having unmet needs.
If California fails to provide federally mandated services, it will lose federal waiver funds — about $2 million. It's estimated that about 35 to 40 percent of people with developmental disabilities receive Supplemental Security Income (SSI). This puts them in the poorest tier of the population, living annually on what Bay Area Water District CEOs earn in a week.
Without waiver services supports, and lacking any alternatives, developmentally disabled people and their families will increasingly face crises; and then end up in the costliest, most restrictive kinds of care, and the least likely to increase capability or independence: emergency rooms, hospitals and nursing homes.
An immediate 10 percent increase in reimbursement rates and regional center funding is needed to “stop the bleeding” of experienced providers and staff, says Francisco Valenzuela of San Andreas Regional Center (SARC), serving Monterey, San Benito, Santa Clara and Santa Cruz Counties. Annual five percent funding increases are needed to prevent inflation from eroding temporary gains.
Finally, since service provider rates have been frozen for over a decade, and staffing ratios that determine regional center budgets haven't changed since 1991, these must be reformed to keep the system sustainable.
Valenzuela is urging people to write state legislators and let them know the personal cost of Regional Center service cuts and growing caseloads.